ROKIHub
a Rokitansky Community
ROKIHub
CONNECT. SUPPORT. GUIDE
There are more and more centers in Italy that deal with Rokitansky-Küster-Hauser syndrome, located throughout the country, from Sicily to Lombardy.
Here you can find an index divided by region and city, with a small presentation of the structure and their therapeutic approach.
RokiHub is a constantly updated reality, but we could not do it without your help, so we ask you to indicate any new reference centers
that could be useful to others.One of the main objectives of the RokiHub is to create a widespread network of Specialists, spread throughout the Italian territory (and hopefully also abroad in the future).
in various disciplines that can be of support to those who are part of the Rokitansly universe. The idea was born from the desire to create a real database service for patients
and families in the area closest to them, where they can feel
followed and guided by psychologists, psychotherapists, gynecologists,
Sexologist*, and other specialists in the sector.RokiHub has taken care to ask for consent and verify the suitability of the specialists before adding them to the database.
Some specialists have made themselves available to provide an initial
telematic support, through our FORUM, where you can interact with them directly.
In the following dataset you can find the reference doctors closest to you, based on your needs.
ROKIHub is based on three main pillars, CONNECT, SUPPORT, GUIDE, patients affected by Rokitansky-Küster-Hauser syndrome and their families.
Thanks to the experience gained over the years, we are
aware of how group meetings and not only, are of fundamental importance for the people involved in this life path.
Our Hub is constantly working to make these meetings possible, with various formulas: group meetings in person or remotely, preferably moderated by specialists in the sector;
meetings with private psychologists and psychotherapists,
Listening webinars where you can send questions
in the preparation phase of the intervention.
This is an ambitious goal and not easy to achieve,
but we are sure that with everyone's support it will certainly be
possible and achievable. ROKIHub will do its part to make this goal possible.The Forum represents a fundamental element of the ROKIHub world, and it is very important to understand how it works correctly in order to use it.
as best as possible so as to obtain and provide the maximum support possible.
Access to the forum is exclusive to those who are members of the site, the page is not visible to non-members.
There are three main categories into which it is divided based on the type of users you want to interact with:
- ROKIHub General Topics
Anyone registered on the forum can access, write and read this section. Specialists, moderators and site managers are admitted;
- ROKIClan
the exclusive clan for ROKI, only those affected by Rokitansky Syndrome can access, write and read this section, they are allowed
Specialists, moderators of the same category and site managers.
- ROKIParentsClan
the exclusive clan for ROKI PARENTS, only parents can access, write and read this section, Specialists, moderators of the same category and site managers are allowed.
For this reason, it is essential to correctly register on the site, indicating which category you belong to. Registrations on the site are accepted or not by the moderators and managers of the site.
The ROKIHub Mission
CONNECT.SUPPORT.GUIDES
Welcome to ROKIHub, a portal created to create a support center , digital and otherwise, dedicated to people affected by Rokitansky-Rokitansky Syndrome and their families , both those of origin and those in the future.
The core principles of our Hub are to connect, support and guide . We want to be present and active in providing services to our members and anyone who needs them, through our help desk .
ROKIHub is founded on the principles of collaboration, openness and transparency . We firmly believe that only by working together can we make a difference.
For this reason, we are already in negotiations to establish partnerships with other associations and entities, not only on the national territory, but also at an international level.
Our commitment is to include in the network Specialists capable of providing direct and indirect assistance to members , thus improving the quality of life of all members of our community.
It is essential for us to communicate to all visitors of our ROKIHub portal the importance of collaboration and unity: without them, nothing can exist. We invite all those who will be part of this help desk, and not only, to consider the opportunity to actively contribute to our support structure, not only for themselves, but also for the well-being of others, and therefore the collective growth, evolution and improvement of the services that we could develop.
Together, we can build a strong and welcoming network to address the many challenges related to Rokitansky-Küster-Hauser syndrome.
We are working to open as soon as possible an effective recognized and structured association, thanks to the experience of support, sharing and dissemination gained in these years by the members of the Hub.
DO YOU SHARE OUR PRINCIPLES AND WOULD YOU LIKE TO KNOW MORE?
DO YOU WANT TO JOIN OUR TEAM?
We have a detailed program with all our GOALS and WIPs for anyone who wants to join the Hub.
News
What's new in the Hub! The Roki world is also constantly evolving, here's the latest news!
